A friend asked me to look at the evidence for hash oil as a treatment for glioma. His teenage daughter was recently diagnosed with brain cancer: a grade 3 anaplastic ependymoma. It recurred very rapidly after surgery and radiotherapy and the latest tissue diagnosis shows an aggressive grade IV glioma. Her prognosis is not good. No further attempts at curative therapy are indicated; the oncologist prescribed only palliative therapy with temozolomide. Her father, who had recently lost his wife to cancer (breast cancer metastatic to lungs and brain), was understandably devastated. As he puts it, he remains “focused on the belief that just maybe a cure can be found.” He stumbled on what he calls “earth-shattering news” regarding hash oil. He and his friends established a private wiki website which they are constantly updating with information about THC (tetrahydrocannabinol, the active ingredient in marijuana and hash) and other possible cancer cures: everything from curcumin to diet. He asked me to look at the information he has accumulated. He said

I hope to convince you in the same way I have done with my daughter’s GPs and her neuro-oncologist at BC Children’s Hospital.

The oncologist was not exactly convinced. He didn’t say he thought hash oil was likely to work; he only said it would be reasonable to try it as a complementary therapy. He said

the data published so far appears very preliminary, most of its potential effectiveness in vivo so far appears in colonic disease, having said that there doesn’t appear to be any obvious down side as a complementary therapy and may have synergistic effect, so may be reasonable as add on to temodal if she tolerates it

I wasn’t convinced either.

I will discuss two issues here:

What does the evidence say about gliomas and hash oil?

When is it reasonable to try an unproven treatment as a last resort?

What Does the Evidence Show?

Several plausible mechanisms have been demonstrated, suggesting that it might work; but the evidence consists almost entirely of in vitro (test tube) and animal studies, with only a couple of small pilot studies in humans and a lot of speculation.

we identify what we believe is a new route that links the ER stress response to the activation of autophagy and promotes the apoptotic death of tumor cells. The identification of this pathway will help to understand the molecular events that lead to activation of autophagy-mediated cell death by anticancer drugs and may contribute to the design of new therapeutic strategies for inhibiting tumor growth.

The Kogan study elucidates cellular anti-cancer mechanisms of THC but warns “sometimes they can act also as pro-cancer agents, especially in low concentrations, acting mostly through growth factors and their receptors activation/induction.” It concludes

In summary, cannabinoids possess some anticancer activity. Possibly they may represent a new class of anticancer drugs that retard cancer growth, inhibit angiogenesis and the metastatic spreading of cancer cells.

None of these studies concluded that we should be treating glioma patients with any form of THC.

The literature is confusing because it addresses different doses, different compounds, and different routes of administration: THC, smoking pot, hash oil, injecting it directly into tumors, applying it topically to skin tumors, inhaling, taking it by mouth, etc. Positive pilot studies are an encouragement to further studies; they are not proof that the treatment works.

The information on the Internet includes glowing testimonials but is contaminated with obvious bias. Advocates come mostly from the ranks of notorious “legalize marijuana” activists. Emotions run high. Many arguments in favor are full of the kind of fallacies we often discuss here, including “they didn’t listen to Semmelweis.” Protestations that THC research is being unfairly suppressed are not credible. Cancer researchers want to find cures, and even Big Pharma stands to reap huge benefits if active molecules can be separated out, modified, and turned into prescription drugs.

I didn’t find anything I would call “earth-shattering” or even anything that could be considered credible evidence that hash oil can cure advanced gliomas. The most I can conclude from my research is that hash oil has promise and is worth studying.

Last Resort?

When a patient is out of options, it is natural to grasp at any straw. Even though the evidence for hash oil is inadequate, there are some preliminary indications that it might help, and some plausible mechanisms have been elucidated. Isn’t it better to try something that possibly might work than to just give up?

How do you know what to try? The private website addresses all kinds of other possible cancer treatments, including curcumin, garlic, diet, etc. Incidentally, it cites a lot of very untrustworthy sources, such as a book by a doctor who repeats the old myth about cancer and sugar and a company that is selling curcumin pills. Should you try all of these treatments at once? If you try hash oil, how do you decide how much and how often?

We read articles in the popular press, for instance in Reader’s Digest, about the child with the rare disease whose heroic parents refused to give up and kept searching until they found the one doctor in the world who was able to cure their child with a new treatment. We hear about these success stories because they are unusual.

We don’t hear about the vast majority of cases where parents wasted time and money in a futile search.

It disturbed me to read through the private wiki, because it was “déjà vu all over again.” I’ve seen this so many times. Someone desperately wants to find a cure, latches onto something that he thinks might work, locates a mass of evidence to confirm his bias, but fails to appreciate the limitations of that evidence and fails to seek out information that argues against his bias (like the possibility that cannabinoids might have pro-cancer effects, mentioned above). In the course of my long career I’ve seen so many promising treatments bite the dust that I have become not only skeptical but probably cynical about it.

Yes, hash oil might be an effective treatment for gliomas and for other cancers. But we can’t possibly know until we test it properly. A patient with glioma today can’t wait for the results of future tests. Forgoing the treatment might mean dying sooner than necessary, but it is far more likely that using the treatment will be useless. It’s a gamble. Where is that crystal ball when we need it?

When you try a treatment on your own, you are essentially acting as a guinea pig in an uncontrolled experiment. Ideally, you could enroll in a randomized controlled trial that would result in some useful knowledge for future patients. But such trials are not always available, and you might not get the treatment; you run the risk of being assigned to the placebo group.

Is aggressively pursuing a cure really the best goal? Success is possible but very unlikely; and the search can become obsessive; dominate the searcher’s life; and consume time, funds, and energy that might be best employed otherwise. How about pursuing other goals that have a much higher chance of success: spending quality time with the loved one, trying to make the most of whatever time she has left, helping her cope, trying to make her remaining life as worthwhile as possible, saying goodbye, creating good memories for the survivors?

I’m going to be mean and ask some difficult questions. Is this father really doing this for his child or for himself? He wants to be able to say he did everything possible and left no stone unturned, so he will have no guilt feelings afterwards. Is the daughter really on board with all this, or is she cooperating mainly to please her father, knowing that it gives him comfort? Is she giving up the foods she loves to follow a restricted diet that has no proven benefit? Would it be better for all concerned to accept the terrible prognosis and confront its reality in more constructive ways? Do false hopes do more harm than good? There are always real hopes: that palliative therapy might extend life, that a spontaneous regression might occur, that life might still be rich with meaningful experiences?

Conclusion

Hash oil has enough promise to warrant further research but not enough evidence to warrant prescribing it as a cancer cure. Is it worth trying anyway? I don’t know. I am asking questions, not condemning. I can’t imagine what it is like to learn that your beloved child has a fatal illness. I don’t know how I would react, or whether I would want to try something like hash oil. It’s possible that I might feel desperate enough that all my judgment, skepticism, and common sense would fly out the window and I might be persuaded to try even the most wildly irrational things. I do know that refusing to accept reality often has unfortunate consequences. It distresses me when families aggressively pursue a will-o’-the-wisp that ends in failure and uses up precious time they might have spent otherwise to make the patient’s last days more meaningful and to create lasting memories.

115 thoughts on “Hash Oil for Gliomas? What Would You Do?”

Assuming that some of the side effects of hash oil are similar to marijuana then I see no reason to not use it. If nothing else the calming effect and appetite increase may help her feel better and enjoy more of the time she has left even if it doesn’t make her better. You have to weigh not just whether the treatment might work or not but whether it will improve quality of life even if it doesn’t. Considering what I know of cannabinoids it may be giving false hope but also having some positive effects in non-curative ways.

“We read articles in the popular press, for instance in Reader’s Digest, about the child with the rare disease whose heroic parents refused to give up and kept searching until they found the one doctor in the world who was able to cure their child with a new treatment. We hear about these success stories because they are unusual.”

I mostly agree with Noadi, but would also consider harmful effects. I’m sure as a last resort I would try anything (even those with low probability) but would hope to avoid substances that have evidence of being detrimental or increasing the problem. But, I’d probably be smoking pot for the enjoyment anyway, and would be ok with a teenage child doing that as well. I think the worst part is promotion; people don’t need to try to convince everyone they meet, in particular forgoing traditional treatment (not the case here), without scientific evidence.

As for selfishness, maybe, but we’re often selfish when it comes to our children, I can’t blame him for that. after losing a wife, losing a daughter may be all he could handle, and in doing this he’s not only trying to save his daughter’s life, but his own. It does feel a lot better to be doing something than doing nothing, for the caregiver, but the one who is suffering needs to decide.

I would do this:
“use what precious time remains to make the patient’s last days more meaningful and to create lasting memories.”
Or something like that.

What’s the use of all our scepticism if, when it comes down to our own situation, we simply capitulate. I mean, it’s just easy to criticise others isn’t it?

And, there must be a 1001 things that could possibly help. So what rationale is there behind choosing just one of these things. I think Ray Kurzweil is an idiot but at least he makes sense in this regard.

“Is aggressively pursuing a cure really the best goal? Success is possible but very unlikely; and the search can become obsessive; dominate the searcher’s life; and consume time, funds, and energy that might be best employed otherwise.”

Perhaps the search can become obsessive. I haven’t anything but anecdotal evidence to argue either way. But you sidle right up to a false dichotomy by suggesting that one can either poke around trying to better one’s journey OR one can spend quality time with loved ones.

Hope springs eternal, Dr. Hall. It is one of the things that makes us human. Commander Data, faced with the inevitable meltdown of his FPU might face his destiny with equanimity. Normal humans, not necessarily.

The assumption seems to be one of grasping at straws in the futile hope for a magical cure. But looked at from another angle it may simply be the assertion that ‘I might be going, but I won’t be going quietly.’

As to the observation that, “[t]he search can become obsessive; dominate the searcher’s life; and consume time, funds, and energy that might be best employed otherwise,” have you ever met a football fan?

How do you know what to try? The private website addresses all kinds of other possible cancer treatments, including curcumin, garlic, diet, etc.

I am strongly reminded of Pascal’s Wager. The argument that you might as well believe in God since there’s no downside if you’re wrong applies equally well to believing in Shiva. Similarly, the argument that you might as well try hash oil as a last resort applies equally well to all the many other things that *might* have some effect.

There’s another factor that is not on the top of most patients’ (and loved ones’) minds – the effects on medical research itself. Most medical research requires control, review, replication, thoroughness to be convincing either way. Alt med requires someone to not die for just enough time to become an anecdote. Though it doubtless matters little to the patient, becoming that anecdote (even if it is one of those miracle cases where the tumour regresses on its own) means putting future people at risk and pushing back actual scientific progress in favour of conspiracy theories, feel-good narratives and false hope. I don’t think anyone actually involved would ever be cold or rational enough to think of this – but the corrosive effect of alt med and other forms of unproven treatments are increased every time someone remembers one patient that survived and the 999 that died after trying X.

How old is the daughter? What does she want? If she is lucid then I think she counts for something. She’s vulnerable; who is advocating for her?

If she wants to live no matter what, then it sounds like hash oil is a better form of advocacy than coffee enemas. Probably just as ineffective in terms of keeping her alive, but better in terms of feeling as though her father is really on her team.

If she’s tired and would be ready to let go if her father would only let her, then he should find a way to let her… if he’s able. What he should do and can do might be very different things.

“What would you do” is an impossible question to answer for this kind of very emotional situation. “What do you hope you would have the strength to do” is more answerable.

If it truly is a last resort, and if it can’t really cause any negatives then I fail to see the harm. One might argue it could potentially speed up the progression, but if the difference is a prognosis of living seven months without it and six months with it… I’d say it is likely worth trying.

However if someone suggested your remove your eyes in order to prolong your life by a few months and there wasn’t a reasonable amount of supporting evidence to suggest it would have any effect would I recommend it? Surely not.

There is no magic formula to determine what treatments should be used versus which should be discarded, but I would assume in most cases someone who has truly tried all commonly accepted treatments has nothing to lose by trying something that is considered outside the mainstream (other than some time and perhaps a bit of money).

The real issue is the purveyors of these treatments tend to suggest they are miracle cures. How many times have we seen a “doctor” invent a new treatment method they claim has a success rate unparalleled by any known and widely available treatment?

Most people will try almost anything to help a loved one even if that means sacrificing their livelihood and tossing aside their personal ethics or common sense. I guess that is what makes preying upon these types of people so easy for the pond scum who have turned it into a steady stream of income.

“But you sidle right up to a false dichotomy by suggesting that one can either poke around trying to better one’s journey OR one can spend quality time with loved ones.”

Or you can do both, of course. As a matter of fact, the father in this case has found an appropriate balance. He read this before I posted it, and he reassured me that he is giving top priority to his daughter’s quality of life and to spending quality time with her. He is keeping his search for a cure in perspective and is a long-time skeptic. She is a mature, intelligent 18 and is on board with everything. She is not following any kind of restrictive diet. She is enjoying a normal teenager’s life.

Unfortunately, I know of many cases where the search became a harmful obsession, with incessant travel to different medical centers and to Mexico, with daily life consumed by following a repulsive diet and a difficult regimen of hundreds of supplement pills and coffee enemas and useless IV infusions, with running the family into debt to pay for useless treatments, with failure to accept the prognosis, settle affairs and say goodbye, etc. I only meant to warn against that tragedy.

As a friend of the person whose family has been devastated by cancer I read your response to his dilemma & was appalled. I found it very unsympathetic & quite unhelpful. Your “stiff upper-lip” advice when confronted by the failure of scientific medicine in tackling the problem of cancer is typical of the medical ‘profession’ that ensures that only people who repeat the orthodoxies will be awarded a certificate to practice. The obscene financial amounts needed to validate a drug therapy ($100 million+) prevents natural solutions like cannabis being properly evaluated. When science has been taken over by big business & controls (even indirectly) public research via the universities then people are left to make these decisions themselves.
Belief in science is still a faith & you deceive yourself if you think you are much more advanced in medicine than the medieval charlatans who were explicit blood-suckers. Progress today in medicine still requires brave individuals to take on the group who repeat the standard views with minimal original thought. When “results-oriented medicine” is viewed as an innovation, you should know you have a problem. When you are prepared to take on the modern vampires (Big Pharma) I might read your column again.

Perhaps what the father is doing by researching and asking questions is trying to maintain a sense of normalcy in a horrifically abnormal situation.

When learned my first wife’s angiosarcoma was stage IV and terminal, I fell apart when I saw her. I then realized I had to be strong and, in consideration of her remaining few days, not show signs of the awful information I possessed. After all, when I reversed the situation and envisioned people walking into my room and bursting into tears and bawling when they saw me, I would feel pretty lousy and scared. So I did my best to maintain some sense of normalcy. I kept a positive attitude, stayed conversational and humorous, and most of all, remained grateful for our last moments together. That’s what I did.

I didn’t have time to research any alternatives to the already aggressive therapy she was undergoing, but if I’d had the time, I may have looked into some options. As a skeptic, I’m pretty sure I would have stayed very clear of anything woo, but would likely have tried something in the cannabinoid family simply for the side effects. Again, anything to stay positive and maintain the tiniest bit of normalcy in a situation one can never prepare for.

Dr Hall – These are some very good points. Things I have said to many others in some form or another over the years. I have personally been in some reasonably hairy circumstances throughout my life (though nothing quite like this) and have each time been very thorough and pragmatic in my response. I have found the reaction to my attitude very interesting – most people definitively find it to be cold, heartless, and much too calculating. In post hoc analysis I finally find that during the crisis situation they were most distressed by the fact that I did not accompany in their irrational and emotional outbursts. Essentially, I was told that me being cool and collected and still thinking things thourgh very rationally provided a stark contrast to the other person’s irrationality and emotionality and heightened their distress over it. I’ve actually had to learn how to feign some of that, at least initially, to make people more receptive to my skeptical and rational message.

@voxpop: based upon what you have written, your absence will not be missed here. Science is not a belief nor is it faith. The fact that you conflate the two belies your deeper ideology and agenda (and clearly evinces your lack of understanding as to what science actually is). Saying science is a belief and faith system is akin to saying that you must believe that showers get you wet and have faith that you will get soapy.

When “results-oriented medicine” is viewed as an innovation, you should know you have a problem.

I am always blown away by this line of argumentation. Denialists of all forms seem to love it, and yet fail to realize what exactly they are arguing (or maybe the do and don’t care?). What else besides “results-oriented medicine” would you like? Would you like medicine to not care about results? Whether you die or live matters not? Whether you live better or not matters little? Can I, as a future physician, stock my practice with people like you, do whatever damn well pleases me that day, and then not care if you show up for the next appointment because you have died?

Now of course, you’d likely claim that isn’t the intended message. Something more along the lines of anti-reductionism is what you meant. You think our focus is too narrow – that we solely rely on pharmaceuticals and bits and pieces of people, not the whole person. In your mind “results-oriented medicine” is merely an antonym for “holistic medicine” – whatever that means. Yet, in your non-results-oriented world, where would you draw the evidence from? How can you reconcile caring about whether your patient actually gets better or not with a non-results-oriented view?

Of course, you can’t. That’s the point. The field of medicine is so vast, I constantly wonder how I will ever learn enough. And this is my life – learning it. People like you, who casually browse through Dr. Google and other such sites, find a small bit of it, and believe that is the entirety of the field. You take an experience and a message like Dr. Hall’s and extrapolate it to the whole of our profession. That is not only unfair, it is completely and utterly untrue. We oft get accused of speaking in absolutes – yet it is the CAMsters and pseudoscientists that speak in absolutes. We rarely do.

Voxpop, you may be right in some respects, but you have expectations that belong to the past..

Sixty years or so ago we all thought that the “magic bullet” for cancer was just around the corner. We were misled by our success with easier foes.

The press, naive laboratory researchers and some elements of CAM encourage similar expectations today, even though lengthy experience now suggests that a single universally effective cancer cure is extremely unlikely to exist

In the meantime the mainstream has uncovered innumerable partially effective agents against cancer: a handful of different physical methods, chemical assaults of many different kinds (often herb-derived), a variety of immunological attacks. New approaches are being tried all the time: angiogenesis inhibitors, gene switches, metastasis regulators etc.

Present methods can permanently cure over fifty per cent of cancers, and provide valuable palliation for the remainder. In fact, you could say that it is “only” early metastatisising cancers and those that involve vital strutures at an early stage that remain a problem. They just happen to be common.

The difficultywith those lies in eliminating every last cancer cell. This is why if a cure for difficult cancers is found it will probably be a “magic shotgun”, or as yet unknown technology.

@nybgrus,
“I have found the reaction to my attitude very interesting – most people definitively find it to be cold, heartless, and much too calculating.”

I found it interesting that voxpop perceived my post as unsympathetic and yet the father in question thanked me for it in an e-mail, calling it “A most wonderful and comprehensive response” and commenting that I had a big heart and that it was obvious that I cared. He appreciated that I said I couldn’t imagine what it was like instead of saying I know how you feel. I thought I was being sympathetic. I feel sympathetic. I didn’t even say I wouldn’t try it myself. I certainly didn’t say “That doesn’t work; don’t use it because it isn’t science.”

I guess people see what they are looking for. Sometimes I feel like I couldn’t write 2 + 2 = 4 without someone finding a reason to attack me for it.

When I was working in the ER the patients I interacted with consistently thought I was very carding and compassionate. I’ve had numerous times when they have come back, months later, for unrelated problems and stopped me to thank me for having a cool head and explaining what was happening to them (I used to work in trauma and acute care as well). I would use the exact same cool tone, calm explanation of the science and facts behind what was going on, and the empathy I felt was genuine. However, when in a personal situation, outside of work, and those involved were my friends or aquantainces those ideals seem to go out the window. For instance, my mother, who is a nurse herself, became very concerned when she had learned about my (then relatively new) girlfriend’s family history of breast cancer. She insisted that she have a mammogram ASAP and through our connections got her a doctor’s appointment the next day and scheduled a mammogram for a few weeks from then. I starting reading up on it, including getting a very detailed history from her mother (who had recently finished chemo for her breast ca), Dr. Gorski’s numerous posts on the topic, my own reading for medical school, and consulted a clinical geneticist (who happened to be working with my group at the time) and everything pointed to the fact that a 26 year old with her particular history has no need for a mammogram. When I explained this to my mother, she flipped out and started yelling at me (she really likes my girlfriend, which is good since I like her too) that it was better to be safe than sorry, etc etc. I calmly countered with facts, evidence, statistics, and genomics (things she is not extremely well versed in, but knows and uses in her own work). She countered with an anecdote about a breast cancer that turned out horribly and “if only” the person had gotten a mammogram earlier it could have been averted. I stood my ground (my girlfriend was in agreement the whole way) and my mother continued to rant and yell. She finally asked how I could be so cold and calculating when it came to someone I loved. My response: “I love her enough to carefully and conscientiously look at, understand, and weigh the evidence to make the best possible recommendation.” My mother thought that was ludicrous and was incredulous that my rationality didn’t fly out the window when it came to such scenarios. My girlfriend greatly appreciated that I cared enough to take the time to really understand the issue and trusted that I was intellectually honest in my assessment as a result of not being clouded by emotion.

That is the sort of scenario I was referring to. I agree that your response was compassionate and sympathetic. The way I see it, offering mindless platitudes and being lost in emotion in such cases is exactly the opposite of being a friend and showing sympathy/empathy. In my mind, the hallmark of a true friend is someone who is willing to say the hard things, make the tough points, and take the time and effort to seriously look upon the evidence before recommending something willy nilly. My dearest friends all respect this in me and I expect nothing less from them. Done right, I think it translates well in a clinical experience with patients (at least it has for me so far). Essentially, if you weren’t a true friend (or a doctor who truly cared about your patients) then you wouldn’t have taken the time to do the research or shown the strength to resist emotional irrationality. There have been times when I too succumb to it, and I am lucky enough to have cultivated friends who will step up and keep me in check because I have done the same for them.

I want to add my thanks to the others for another engaging post. This is not some ethics class debate, this is what really happens to people and how they deal with it.

My thought was, “Could it be considered palliative?” (somewhat like Noadi was saying). If it eases her suffering (appetite, etc.), then whether it treats the cancer is not essential. Prayer is not listed in any formulary, but it is palliative for many.

I have no idea how I would handle it if my child were so sick, but I do know that If I were in the thick of a medical crisis and I went to a friend for advice, it would probably be because I was concerned I had lost my perspective and wanted the opinion of someone who was not so close to the situation. In that case, I would want my friend to be cognizant of my emotions, but also give me their honest opinion. That is the whole point of asking.

To me it sounds like you handled it well, Harriet Hall.

I don’t think voxpox is attacking you. I think he is attacking his imaginary doctor type construct with your name on it…although that might not be less distressing.

Nybgrus, if your girlfriend has a lick of good sense*, she would be impressed that you told your mother to step off. The last thing that a woman needs in life is a potential MIL who aggressively takes control of their health care decisions and a potential husband who let’s them. It would only be worse when children come along.

“Progress today in medicine still requires brave individuals to take on the group who repeat the standard views with minimal original thought.”

Have you been into the hash oil? Who the hell do you think has taken AIDS from a certain death sentence to a manageable disease, some herbalists drinking mushroom tea? Who has eradicated smallpox and polio and all but eradicated a plethora of other diseases and syndromes, dopes with “minimal original thought?”

Wherever there is a desperate case, there is someone to exploit it and someone else who, against his judgment, has no option but to allow the exploitation.

Such was the case when my wife was diagnosed with MS. She heard of the Nieper Clinic in Hannover, Germany, and set her mind to going there for treatment. I was extremely skeptical, but what can one do but make that visit possible? She saw him for five minutes total. He asked for no medical history, did no examination. When she pulled out a small tape recorder to record his instructions, he said that would be unnecessary because he would give her a tape—which he did. When she got back home, she found the tape blank.

But she did begin the regimen of his prescriptions—pills and injections, purchased from a pharmacy at the clinic. We imported two packages of supplies—the price between the two packages tripling in the meantime. The third was intercepted by customs—much to my wife’s chagrin and my relief.

Since no health professional would give the injections, I had to do it, despite being all but certain it was fraudulent, and seeing no benefit in their use, no improvement in my wife’s condition.

But how does one refuse to accommodate the desperate wishes of a loved one?

That was really silly of me to post, so I am the one who is dumb here (and who probably spends too much time on the internet)! It was too much of an inside joke.

Rule 14 comes from a bit of 20 year old, crass internet folklore called “The Rules of the Internet.” It states, “Don’t feed the trolls” (which doesn’t make sense on face). It refers to people who post comments (trolls) for the sole purpose of inflamming other readers thus inciting reasonable people to post inflammatory replies (feeding the troll) which encourages the troll to continue their mischief. The only way to get rid of trolls is to ignore them – which is why I posted “Rule 14.”

Its like my favorite band joke that only makes sense to other people in band, “Doctor, Doctor! My oboe player swallowed his reed. What should I do? The doctor says, ‘If I were you, I would mute a trumpet.'” Maybe a doctor here who was in band just got a big laugh, but most people didn’t get it.

It seems to me that when your oncologist tells you that your only treatment option is hospice and pain killers, it would be foolish *not* to try a pain killer that might, just might, maybe possibly, have some effect on the cancer itself, however remote. If it gives the patient and family nothing more than the merest possibility of hope, isn’t that enough? On the one hand, you are probably going to die. On the other hand, you are *still* probably going to die, but maybe you’ll get a high first, or be able to enjoy one more bowl of ice cream you couldn’t otherwise keep down. Isn’t that what “first do no harm” is all about?

I am a relative of the girl we are talking about so I just wanted to clarify the situation a bit. She’s an intelligent, articulate 18 year old girl who at the moment is leading a normal life. Like all kids in their last year of school, she’s totally focused on graduating in June and is considering offers to start university later this year. And she is symptom free. Indeed, when the 3cm tumour was surgically removed five weeks ago, for the second time, she was technically cancer free. Weird isn’t it?

The surgeon said he had removed it all, but he had thought that the first time. If he had left just one cell, which he was sure he had, it would grow back, it’s such an aggressive tumour. When it was removed it had grown about a centimetre a month and you simply can’t have brain surgery every quarter. The doctors have nothing to offer which will cure her. And they have nothing to offer which might cure her. So they say she is now in palliative care and the average life expectancy is about a year.

So as a parent what do you do, sit back and wait? You simply have to look around for some things which have worked with some people. Speak to them, find out what they did and of course read up as much as you possibly can with regards to any research which may have been done on the subject.

There was a mention in Harriet’s piece that cannabis oil may cause cancer. But when you have a grade IV erminal cancer, can it possibly get any worse?

Whether or not her father is doing this for himself or for his daughter is irrelevant, he’s doing what any parent would do in this situation. And all the decisions are being taken by his daughter, who wouldn’t take anything just to please her father.

In an earlier book by the same author (Doctors: The Biography of Medicine) Semmelweis the subject of one chapter. As a matter of fact, says Nuland, even in Vienna the professors in the medical faculty were sympathetic or neutral with respect to Semmelweis, the exception being the head of the department.

Semmelweis was not effectively communicating his findings is an understatement.
1. He had not written anything down, so nobody knew what data he had to prove his case.
2. He had not done any experiments with animals (which was may to advanced an idea in that time).
3. He not merely asked people to wash their hands: his recommendation was that the hands should be washed for five minutes in concentrated chlorine bleach until they were slippery.
4. Most of his argumentation consisted of calling people murderers if they didn’t believe him.

And just when he was about to score a victory in discussions he left Vienna in a hurry without saying goodbye, because he felt slighted (something to do with teaching privileges or pay); his friends who had been supporting him were left ‘in the cold’.

After he left, his successors managed to reduce the death rate by merely instituting that students with a cadaverous smell (from the anatomy / autopsy rooms) were not allowed into the obstetrics ward.

One point in favor of Semmelweis: his arguments (which he didn’t present) were statistical in nature. That so-called ‘numerical method’ was quite new at that time. About 20 years after Semmelweis’ discoveries Mendel presented his discoveries about peas – also data of a statistical nature, hence not appreciated at all. Quételet had published his book about statististics applied to man in 1835, and in the same year Pierre Charles Alexandre Louis had used the “méthode numérique” to prove that bloodletting doesn’t work, but in the time of Semmelweis this was still a new fangled idea.

So the lesson of Semmelweis’case is threefold:
A. if you think you have made a useful scientific discovery, then use the proper scientific ways of telling about it. Throwing around insults is not the proper way.
B. if someone acts like a crank, he probably is a crank, but there’s always a chance he maybe on to something, so try to remain polite and if possible try to look at the arguments and try to ignore the cranky appearance.
C. in medicine, the one with the best statistics has the best arguments.

So if someone mentions “they didn’t listen to Semmelweis” it really means “I know I sound like an idiot, but would you please do the science for me?”.

@michelle: Thank you. She does have plenty of sense. And is much smarter than I am – she is currently doing research in porous fuel injectors for scramjets and modeling hypersonic shockwaves in 4 dimensions and using fractal analysis to… well, I’m lost at that point. Suffice it to say she is a pretty smart cookie.

@Mrs. Cat: Thank you for taking the time to offer some insight. Every single situation is, of course, quite different. I hope this has not come across as a bashfest. Speaking for myself, I believe that I would be doing exactly the same as the father in question here. Sitting around and waiting is not at all what I would advocate. But a conscientious search for possibilities, however slim, and answers is perfectly reasonable. The problem is that, as we can see, the answers are partial and sometimes conflicting. The question is what to do then? I think anyone here affiliated with SBM would say that is a personal choice based on values and desires. What is consistently advocated here, in a nutshell, is truly informed consent. If some treatment is undertaken as a personal choice, however odd, whacky, weird, what-have-you, with full knowledge that there is little if any evidence that it will help, then I don’t think anyone here would object to it. It is the purveyors of these even less convincing CAM modalities that claim they know the answer, that they can cure, and prey upon vulnerable people that upsets and angers me, and I reckon the rest of the cadre here would echo that sentiment. And based upon the article posted by Dr. Hall, I reckon that you and your family are in the same mindset.

I sincerely hope that something works in the young girl’s favor and my best thoughts are with you and your family.

nygbgrus:
Thank you for your kind words. There is a lot of evidence that cannabis oil can help reduce the growth of cancer cells. A hundred years ago, before we had all the pharmaceutical drugs, cannabis in one shape or form was on every chemist’s shelf and used to treat everything from pain to corns. One of the main proponents of the oil, Ricky Simpson, made it to give to his friends who had cancer. He didn’t sell it and he hasn’t made any claims that it will definitely cure anyone. He simply thinks it’s worth a try. We are in touch with him.

I would not, under any circumstances, use any form of treatment recommended solely on the basis of anecdote or basic science that hadn’t been subjected to properly controlled clinical trials (except to be part of that trial).

The chances something like that would work are too low to be bothered wasting my time, money and energy. But, then, I don’t buy lottery tickets either.

Marijuna is used as a medicine for more then 2000 years.
Furthermore, its well known that it makes people relax and have a good appetite which is very important for people with cancer, especially after chemotherapy or radiation. Next, there are virtually no down sides to it, you can’t get addicted and it is even used during pregnancy to combat morning sickness or hCG syndrome without any ill effects to the child whatsoever (Dr. Melanie Dreher is one of the experts on this topic). Furthermore, its not used only for cancers but for brain inflammations like MS or dementia. Given its exceptional safety its wise to recommend it. Given the exceptional safety of other mentioned stuff like curcumin, I don’t see why that wouldn’t be tried either.

In my opinion, H. Hall is too paranoid here. There is healthy dose of skepticism but this ‘issue’ is overblown.

@Mrs Cat,
“You simply have to look around for some things which have worked with some people. Speak to them, find out what they did and of course read up as much as you possibly can with regards to any research which may have been done on the subject.”

No, you don’t “simply have to.” There are people who seek out an expert oncologist with a good bedside manner and put themselves in his hands, trusting him to do the appropriate research and advise them based on his knowledge, experience and hard-earned judgment.

There are people who accept the illness as God’s will and dedicate their suffering to God trusting that it will be rewarded in the afterlife.

It is not up to us to judge which approach is “best.” It’s an individual choice.

Unfortunately, one of the lessons of science-based medicine is that just because something has been done for a long time doesn’t mean it works. Bloodletting was used to treat a lot of things for a long time before doctors figured out that it not only wasn’t helping patients, it was harming them.

Again, “it is well known” tends, at best, to leave out the edge cases. Marijuana is “well known” to relax people, yes: but in some people it produces tension or even paranoia. Not many, and I hope the woman we’re talking about isn’t one of them, but it does happen. It has also been “well known” that marijuana was the devil’s plant, that it would lead to sexual degeneracy, and that anyone who smoked marijuana would go on to use heroin. Mostly nonsense (it can reduce inhibitions, and there are people who would equate that to “degeneracy” even when it involves consenting adults who have known each other for years), but “well known” and “true” aren’t necessarily the same thing.

We’re talking about a complex plant that contains a number of chemicals that can affect the human body.

Is it paranoid to try to objectively assess the published research and to perceive that the evidence is insufficient?
Is it paranoid to recognize that much of what we read in favor of marijuana is untrustworthy because is written by passionate advocates of legalizing it? (Ricky Simpson falls into this category).
Is it paranoid to try to put this treatment into perspective with many, many other claims that are not supported by any better quality evidence and with the proportion of discarded treatments that once looked similarly promising compared to the small few that panned out? Is it paranoid to realize that poor decisions about cancer treatment have destroyed the lives of others? Is it paranoid to think that we are frequently deceived or self-deceived about what really works and that rigorous science is the best (only) corrective?
If so, I am paranoid.

The chances of me not repeating someone else’s thought in the comment thread are extremely low, but I’ll say this anyway.

Given the terminal condition of his daughter, and assuming her informed consent, I see absolutely no reason why they ought not pursue any and all possible avenues. Ultimately it comes down to how much are they willing to sacrifice (in terms of money, effort, time, emotions, etc) on a gamble. For some people life is worth quite a lot.

So far as I can see there is nothing irrational in them trying our hash oil (and other possible alternatives) and there is a way in which there will be no ethical objection to them doing so either. Unfortunately nothing in the post sheds light on the morally relevant features of the case to make this second determination.

Actually I think she is a little too accepting.
For example, I don’t get the “individual choice” mantra and the “non-judgemental” approach. Some things are just wrong and they should be pointed out. What’s “individual choice” against the opinion of an expert who spends his life treating patients with these conditions. What’s “individual choice” against science-based medicine. Even “informed choice” is a form of political correctness. No layman can be sufficiently informed to make choices. At best, the information supplied should direct the patient towards the “choices” made by science-based medicine. Choosing differently is not a “choice” but a “rejection” of science based medicine and an acceptance of non evidence based ideas often pulled out of thin air.
But I’m on my hobby horse here.

” There is healthy dose of skepticism but this ‘issue’ is overblown.”

There is no compromise with scepticism. You cannot choose when and when not to use it. You can’t be nearly a sceptic.

Harriet:
Regarding your comment about finding a good oncologist and trusting him to do the appropriate research, I should point out that the oncologist and other medical professionals have made it quite clear that they are practitioners and not researchers. They say they simply don’t have time to do research. As they have nothing to offer which might help, they have been very supportive in the family’s research into things like hash oil and curcumin and have signed the paperwork to approve their use. She’s now on both. Can you imagine a vibrant 18 year old girl with no symptoms being told you have about a year to live. At that age kids think your parents know everything. It takes us a while to realise that they don’t but I can remember being that age and thinking that my parents could fix anything which went wrong. Does the patient want to try anything in order to have a chance of living? You bet she does. There’s a big difference between giving her something which might kill or cure and something which won’t kill but might cure………or at least slow down the tumor’s growth.

I was reading a blog by a 30 year old girl with terminal cancer and she said you never get rid of this, but you want to slow things down so you’re still around when and if they do discover a new treatment with a better prognosis.

That’s all we can ask for and the next MRI will show us if the hash oil and curcumin have made any difference to the tumor’s usual growing speed of a cm a month.

The oncologists are practitioners, not researchers. But their job requires keeping up on the latest research so they can offer the best evidence-based treatments for their patients. I would be interested to hear Dr. Gorski’s take on this.

@BillyJoe: I think we are all dancing around the central idea here – patient autonomy and choice. For example, I can cite all the evidence in the world and give you an informed and expert opinion that smoking is very bad for you (it is, trust me!) but that does not negate your personal rights to smoke. It is my duty as a physician to try and get you to stop since I know full well how bad it is, but it is not within my rights to berate, belittle, or abandon you if you choose not to stop smoking. Taken to the extreme, it is also within a patient’s rights to refuse treatment that will result in their imminent death. Would I try to cite evidence and make a plea to change your mind? Of course. Would I do my best to insure you are as fully informed as possible? Of course. If you still decided to refuse, would I strap you down and force you to? Assuming you were deemed competent, no. That would be strong paternalism – something that is no longer considered medically ethical to do.

In the case of this young girl, they seem to be as well informed as possible and are working within the constructs of their value, judgements, and beliefs and choosing to spend their money and resources knowing that there is a slim (if any) chance this will help. That is as good as we can hope for. It is the role of people like Dr. Hall in their lives (and their oncologists) to be skeptical, to clearly state the unliklihood of this working, to demonstrate the paucity of evidence, and to cite the chance of negative outcomes. It is then the decision of the patient exclusively (she is 18) but also of the family in support as to what course of action to take. Would I, personally, do the same? Well, I certainly would look at all these things and consult with experts as best I could. Knowing myself, I would likely go your route, BillyJoe, and stick to the evidence base and eschew things with little or no likelihood of help and spend my time and money elsewhere. But that is my values and beliefs informing my decision. The manner in which I weigh the decisions I come to is inherently and uniquely my own. I could have just as easily had a different set of life experiences and values that would lead me to weigh things slightly differently and make the decisions the family and patient in question have.

And that is the entire point – our role here is to offer the skeptic line. To give the evidence and knowledge for the best possible decision. To prod towards good decisions when we have clearcut outcomes. To do our duty in fully informing the patient. And not to impose our individuals values on others. If asked directly “What would you do?” I would not simply answer “I would stick to the evidence and not do this.” I would first preface the statement by saying that my answer reflects my values and ergo inherently skews my interpretation of the data.

No one here is being preyed on by sCAMsters. No one is being coerced by family to do something they don’t want. I would still say that it is unlikely to work and if she does go into remission I would caution against citing the hash oil as having accomplished it. It could have, but likely not. And even if it did, that does not mean it can be extrapolated to the population at large. Beyond those caveats I personally feel that the patient and the family has the right to rationally pursue whatever they like in treatment.

Billy Joe “What’s “individual choice” against science-based medicine. Even “informed choice” is a form of political correctness. No layman can be sufficiently informed to make choices. At best, the information supplied should direct the patient towards the “choices” made by science-based medicine.”

Billy Joe – The facts of playing the lottery are one thing (the cost of the ticket, your odds of winning, etc). Individuals experience playing the lottery differently. I do not like the lottery, some people find it exciting.

I respect SBM stating facts. I want fact. But I rather presumptuously believe that I am more likely to know what choices I am going to feel comfortable with and what choices will cause me mental pain or anxiety. SBM does not get to make the choices for me, or paternalistically direct me to the “right one”.

Unless of course, the SBM practitioner is going to personally experience each moment of anxiety or pain along with me, then I might give them a vote.

Unfortunately this girl is not buying a lottery ticket she’s playing Russian roulette.

Her doctors, having no evidence-based treatment to offer, were given all the facts we could find on curcumin and hash oil and having read the evidence, limited as it may be, they said go for it, it won’t harm her. Anyway it’s her decision in the end – she calls the shots.

Thanks for your considered response.
I don’t think we think very differently on this subject. I guess it’s more a difference of emphasis. Perhaps my view is extreme but, as I said, you can’t be nearly a sceptic.

“Beyond those caveats I personally feel that the patient and the family has the right to rationally pursue whatever they like in treatment.”

I wouldn’t call this a “right”. If this product was outlawed because there is no evidence of effectiveness, I would not defend this person’s “right” to use it. I would applaud a sensible piece of legislation.

And, even if you could convince me that they had a “right” to try this unproven remedy, I would not respect them for doing so. And that is more to the point. I would not respect a person for using a treatment without evidence of effectiveness. Why should I?

“Individuals experience playing the lottery differently. I do not like the lottery, some people find it exciting.”

But do you respect them for it?
Seeing someone getting excited about the lottery draw is a negative experience for me. As someone once said: the lottery is a voluntary tax. They find the lottery exciting because they do not realise that their odds of winning are so close to zero it doesn’t matter.

“SBM does not get to make the choices for me, or paternalistically direct me to the “right one”.”

If there is an illness that is uniformly fatal if untreated but has a 90% survival rate if treated by X, and a 25% survival rate if treated by Y, I would expect the specialist to direct his patients towards treatment, and towards treatment with X. I don’t really see where choice comes into this.
Where treatments are less clear cut (eg prostate cancer), then the patient’s input is of consequence. Otherwise I think we’re just trying hard to be politically correct.

BillyJoe, concerning your hypothetical. IMO it is the doctor’s job to inform the patient of their chances of survival if they proceed with each treatment and the potential drawbacks of each treatment.

If the doctor genuinely believes the patient isn’t understanding the information or is genuinely miscalculating the effect that a treatment may have on their life, then I don’t think it’s entirely inappropriate to attempt to further educate a patient. For instance, if a patient is rejecting treatment because they believe they would rather be dead than lose a limb, then an introduction to another person who is coping well after limb loss or a consultation for a prosthetic is acceptable.

Do I respect someone’s decision, if it is different than mine? I just don’t know that is matters very much. I respect their right to make an informed decision, because I want a right to make an informed decision.

Honestly, if I thought that doctors were just going to make the decisions for me, then give me only the information that would convince me to make the “right” decision, that would scare the s$#t out of me and seriously deter me from visiting a doctor at all. When it comes to decisions about my health, I want the choice to make the decision that 98% of other people think is a bad one.

This is a good summary of an attempt to require access to experimantal drugs and objections by the Society for Clinical Trials in opposition. This was proposed, ultimately failed, legislation and highlights some problems with using these drugs from inception through advertising and usage. It is a dated congressional attempt to answer the question of whether a patient should have access to anything they choose in hopeless cases. This is the stance in opposition to that position.

It is also, more importantly, a reminder that congress can legislate anything, license anything and regulate anything they have the votes for, science, the Constitution and God notwithstanding.http://www.sctweb.org/positionpapers/S.1956-clinical-trials.pdf
This was the working title for the proposed legislation:
” Access, Compassion, Care, and Ethics for Seriously Ill Patients Act”.

Patient choice is partly about values. Not evidence versus faith, but things like what is and isn’t worth suffering for. A doctor can tell you, say, that a treatment has a 50% chance of curing your disease, but here are the likely side effects, and the unlikely but possible ones. The doctor can’t tell you whether, say, it’s worth buying an extra six weeks of life at the cost of spending your entire remaining time hospitalized, versus having less time but being able to spend it at home, because people are different. Your doctor can’t tell you, as a fact, what level of pain relief is worth losing lucidity to narcotics. At best, they can give you an estimate of how much pain relief the narcotics will give, and what the side effects will be.

Would you spend all your money to buy a 1% chance at a cure? The answer to that may depend on what would otherwise happen to the money? Does it go to a beloved partner or children, or have you left everything to charity because you have nobody you want to give it to? If you die, who will take care of those children? Those are important questions, and they aren’t medical.

Perhaps my view is extreme but, as I said, you can’t be nearly a sceptic…. I wouldn’t call this a “right”. If this product was outlawed because there is no evidence of effectiveness, I would not defend this person’s “right” to use it.

You can indeed be a skeptic without forcing your values on someone. As Michelle and Vicky have pointed out, I can full well be a skeptic, tell you that the data show nothing to make me think something will work and in my opinion is a worthless option to pursue. However, if you understand what I am saying, can rationally weigh the options, and decide in your opinion that it is worth doing then that is fully your right. A skeptic can (and should) inform you about the evidence and what it actually says. I skeptic cannot (and should not) make value judgements for you.

And I am not talking about illegal things. Obviously I cannot advocate for illegal actions or substances. However, in a medical setting most substances can become legal and quite frankly I am for the legalization of many currently illegal substances. I do believe it is a right for every adult, competent person to make informed and educated decisions about what they do with their bodies and put into it. Certain things we can decide are illegal because as a society we have decided the harm significatly outweighs the good and feel the need to protect the more vulnerable members of our society. But even that thinking seems to fail often and is not as easily answered as that. Otherwise, as Michelle so adequately pointed out, if I as a physician could tell you only the things I thought would lead you do “the right” decision that would no longer be me being a skeptic, nor would it be inormed consent – that would be strong medical paternalism where I substitute my values for yours. And even you wouldn’t want that, BillyJoe, no matter how intellectually honest, well meaning, and intelligent you may or may not think I am.

And I didn’t say the specialist should withhold information to ensure you make the right choice. But the way he presents the information can be crucial in “determining” the “choice” the patient makes.

You have all decribed marginal situations, but most situations are not marginal. A woman has a small lump found on mammogram. What specialist in his right mind would offer this patient choices? She needs the lump removed as quickly as it can conveniently be arranged. It makes no sense to have a discussion about choices. If she goes off and has Noni juice instead, she is an idiot – or the person who convinced her is an idiot – and I have no respect for her decision.

When the situation is marginal, what sort of choice do you have really? You have a brain cancer which is virtually 100% terminal within a year. Do you remove the cancer to relieve head ache and prolong life a little. When it grows back do you try again. You might the first time and you probably wouldn’t the second time. Congratulations if you think you have exercised your right to make choices. You’ve probably done not much more than the equivalent of a coin toss.

Do I think a patient should have a right to choose treatments with no evidence of effectiveness? In fact, I think these treatments should be outlawed outside of clinical trials. I do not respect a patient’s right to choose in these situations. I do not respect their choice to use an unproven treatment. I think they are in denial of science-based medicine. To respect a patient’s choice in these situations is just weak accommodationalism ans serves no one’s interests in the long run.

“Do I think a patient should have a right to choose treatments with no evidence of effectiveness? In fact, I think these treatments should be outlawed outside of clinical trials.”

It should be illegal to pray over an ill relative?

It should be illegal to drink raspberry leaf tea at home as a remedy for anything you can think of?

It should be illegal to try garlic cloves for bacterial vaginosis?

It might make sense to say it’s illegal for an MD to prescribe these things. Would that include making it illegal to give hospitalized patients permission to take whatever it was they were taking at home?

It was quite interesting. I presented a poster there where I explain why hormesis is the most fundamental dose response.

The “therapeutic” effects of random herbs are very likely due to hormesis which has pleiotropic effects. In other words herbs work because they contain toxins and those toxins stimulate compensatory responses which over compensate for their toxicity.

The dose matters a gigantic amount. Too little and there isn’t much effect. The right amount could help and too much will cause permanent damage and could even be fatal.

The hormetic effects of phytotoxins are probably the main reason why lots of green leafy vegetables and other plant matter is “good” for you. It is all the toxins which activate compensatory pathways and those compensatory pathways over compensate and repair all the random damage that life causes anyway.

This is probably better as a preventative of cancer, because once cancer has happened, the genome of the cancer cells is all messed up and the compensatory pathways don’t activate properly.

If I had recurrent brain tumors likely to recur, I wouldn’t fart around with hash oil or any alt med crap. Instead I’d make a website with a PayPal button for donations. I’d put up a brief summary of my situation and ask for money to support a kick-ass road trip from now until the snow falls in 2012.

To show my gratitude, I’d ask people to include a paragraph about anything along with their donation, which I would read aloud into a video camera while standing someplace interesting. I’d upload these readings to YouTube so people could follow my journey as it happened.

I’d get a car I could sleep in, maybe a Honda Element with the back seats replaced by a bed. I would head toward San Diego where it is clear and sunny 265 days per year. On the way I’d see Yosemite and the Grand Canyon.

I would toss my shyness in the bin and fearlessly walk up to strangers to ask questions, and to ask for help. I’d try to crew on a racing sailboat. If that worked out, I’d make friends with someone rich with a boat capable of sailing to Hawaii. And I would try to go swimming with the dolphins.

“If I had recurrent brain tumors likely to recur, I wouldn’t fart around with hash oil or any alt med crap. Instead I’d make a website with a PayPal button for donations. I’d put up a brief summary of my situation and ask for money to support a kick-ass road trip from now until the snow falls in 2012.”

Now here is someone with his head on straight.
Why would you spend your last days on Earth legitimising that which you have denounced all your rational life?

I agree with GLaDOS: Trash the hash, scrap the crap, and do something imaginative that will actually make a difference to the your life that remains.

I have seen too many friends with terminal cancer* whose remaining lives were wasted pursuing pipe dreams, and sometimes it’s been their so called friends who have done this to them.

“Basically, Diamond Nuts made its claim based on studies suggesting that omega-3 fatty acids have been suggested to do these things, and its walnuts contain omega-3 fatty acids. The FDA replied:

There is not sufficient evidence to identify a biologically active substance in walnuts that reduces the risk of CHD. Therefore, the above statement is an unauthorized health claim.”

The issue is, you can stop people selling things with false claims, you can’t stop people talking about things that they are not selling (regardless of whether what they are saying smart or stupid, IYO) without infringing upon free speech.

If I wanted to infringe upon free speech, the first thing I would do is wander down to Dearborn and wack Terry Jones up side the head. Worrying about what regular people struggling with an impossible problem are saying about how they are going to try to cope, is very low on my list.

BillyJoe, I’m not aware that informed consent requires the doctor to tell the patient of all other choices available to them. All the informed consent I’ve been through have been basically; this is the procedure we are going to do, these are the side effects of the procedure, these are the major, minor, more common, more rare, risks, if you experience any of these symptoms, do such and such (see your doctor, go to ER, etc)*.

Also I’ve never had a doctor list all my choices in response to an illness. So, when an ultra-sound found nodules on my thyroid, the endocrinologist just told me, “We recommend a biopsy to check for cancer.” The doctor who did the biopsy did the informed consent (see above).

But some patients may ask, “What if I don’t have the biopsy?”, “Do I have any other options?” At that point how can the doctor communicate honestly without having a discussion about choices?

*I’m not 100% sure that part was in informed consent, it might be in post op paperwork.

I am torn, I’d want to do anything I could to make sure that my kids and husband would be well taken care of…but more selfishly, I’d like to find the best anti-anxiety drug available (lowest side effects, highest mental clarity, no worries about dependency) and spend a few weeks seeing how the other half lives.

There is a law to stop people selling things with false claims, but it’s not working except in isolated instances. Most investigative agencies will not even act unless and until there is an outcry from the public about significant harm being done. What daedalus’ statement means is that treatments should not even get to be sold or promoted to the public unless and until evidence for effectiveness is produced. Horse before the cart.

“BillyJoe, I’m not aware that informed consent requires the doctor to tell the patient of all other choices available to them.”

If true, that just proves my point that “informed consent” and “choices” are not what they seem to mean. We are not “informed”, we are told what we need to hear. And we do not make a “choice”, we agree to do what the doctor suggests. The rest is just political correctness.

“But some patients may ask, “What if I don’t have the biopsy?”, “Do I have any other options?” At that point how can the doctor communicate honestly without having a discussion about choices?”

And how should the doctor respond? He should tell you what you need to hear so that you will agree to the biopsy because it is in your best interest to have it. If you still refuse to have the biopsy and you think you have made an “informed choice”, congratulations.

Also: in a study that got a certain amount of attention when it came out but which I don’t know how to look for any more, schizophrenics were more concerned about physical side effects of their medications than their doctors were. That is, schizophrenics didn’t want to be obese and diabetic and were willing to tolerate schizophrenia symptoms if that was what not being obese and diabetic required.

This goes against the values of most health care workers who consider the brain the most important part and the rest of the body just an accessory; if one has to be sacrificed for the other, then it’s obvious to most people that the sacrificing the body to preserve the mind demonstrates the proper priorities.

Schizophrenics may see things differently. They may feel that their mind may never be that great, but they can be in good physical condition; they may have already acommodated to symptoms of schizophrenia and be willing to tolerate them.

In this desperate case, I don’t see what possible choice does the poor father have. Conventional medicine have raised their collective hands on this girl. Some here recommend doing nothing and waiting for the inevitable. It is not just heartless, it is foolish. Doctors are not gods and not even as definitive in their pronouncements as physicists. Sure they are experts in their fields, but they don’t even study nutrition and diets. So take their advice with a pinch of salt, and consider all available options. It simply common sense.

In my opinion, the lack of emphasis on the study of diets and its effects on health, is the single biggest failure of the modern medicine. An ounce of prevention is worth a ton (not a pound) of cure!

kulkarniravi “In my opinion, the lack of emphasis on the study of diets and its effects on health, is the single biggest failure of the modern medicine. An ounce of prevention is worth a ton (not a pound) of cure!”

Oh please, exactly how could a child’s diet cause fast growing brain tumors at the age of eighteen? What do you think she’s been eating? Uranium twinkies? Understand, when you throw around groundless ideas about prevention, diet and cancer that you are, in effect, suggesting that the young women’s cancer is the fault of her parent(s) and their food choices, without any evidence.

BillyJoe “If true, that just proves my point that “informed consent” and “choices” are not what they seem to mean. We are not “informed”, we are told what we need to hear. And we do not make a “choice”, we agree to do what the doctor suggests. The rest is just political correctness.”

Hmm, I’m still not feeling the love. Maybe different backgrounds, experiences, personalities are causing the gap. Guess we’ll have to agree to disagree.

Well, I am not sure of the basis of some of the self-congratulation and backslapping here.

I sincerely hope that those who have spend a lot of their time telling CAM users how none of it works, and how dim-witted they look for indulging in such nonsense, would NOT hypocritically turn in their skeptic badge the instant they are inconvenienced by some incurable disease or other.

I am sure that none of those present would, but I assure you that having one of those illnesses does change perspectives a little. In 2003 I was thought by all to have disseminated liver secondaries with no prospect of very useful treatment .

One of my sons said, “Dad, if it would help, you can have half of my liver”. When I told my wife this, she said “Oh, darling, you can have ALL of mine”

Makes you think about what is important. You can more readily understand why people end up making weird decisions.

For the record I never dreamed of using alternatives. I have said elsewhere why I think that is almost certainly a waste of time.

But I can’t bring myself to sneer at those who, being infinitely less information-privileged than I, choose to do so. I see my role as making sure that they understand clearly what conventional methods can offer, while also not being shy of giving an opinion on “alternatives” if I think it is warranted or it is asked for.

I think people do value ours opinion, while not necessarily wanting to be limited by it.

There are always exceptions.
But how often do you think a situation like your mother’s comes up. She was unfortunate in that her doctor only did half his job. He looked at the evidence but forgot to apply if to the patient in front of him. Your mother was astute enough to see that.

I made an informed choice myself many years ago about testing for prostate cancer after my father died of this disease. But it took a look of research over a long period of time to properly inform myself of the facts before I made a decision. I made what I considered to be an informed decision which, as it turns out, is consistent with the results of the three most recent large trials on the value of testing for prostate cancer.

But I’m not going to pretend that I will be able to make an informed choice about all the medical issues that come up in the future, especially if there is no time to do any research and a decision is required quickly. I’m going to have to trust that the doctor is sufficiently informed about the illness from which I suffer, and my particular circumstances vis a vis this ilness, to inform me of the next most appropriate move to which I will really have no choice but to agree.

It’s the same with the patients with schizophrenia.
The doctor must have the facts about schizophrenia and then apply it to the patient in front of him.
Having treated many patients with schizophrenia in the past, and having informed himself sufficiently of the literature on schizophrenia and its management, he should be in a better position to decide whether the particular patient in front of him will be placing himself at risk by stopping or reducing his treatment. Certainly he should be in a better position than the patient himself.
In fact, patients with schizophrenia often default on treatment becasue of real or imagined side-effects and end up hospitalised and on even more potent medication than before. Such patients are often placed on community treatment orders after leaving hospital to prevent the recurrences that commonly occur.

(Just an aside: I noticed you used the word “schizophrenics”, but I’m sure that was just an oversight. I’m sure that you meant people with schizophrenia. :))

“Some here recommend doing nothing and waiting for the inevitable.”
Please point out where anyone has advocated doing nothing.

“Doctors…don’t even study nutrition and diets.”
How misinformed are you then?

“In my opinion, the lack of emphasis on the study of diets and its effects on health, is the single biggest failure of the modern medicine. An ounce of prevention is worth a ton (not a pound) of cure!”
As I said, how misinformed are you then?

Nah, I meant “schizophrenics,” in exactly the same way I say “lesbians” instead of “people with lesbianism.” People who say “people of the Jewish persuasion” mark themselves as at least a little anti-Semitic. Folks who spent time in synagogues tend to call themselves “Jews.”

I obviously see the point of people-first language. The counter-examples I gave reflect identities, not diseases. To the extent that someone identifies as a schizophrenic (mad pride!) they might be expected to reject people-first language, but many/most people don’t choose to identify with their diseases.

On the other hand, people-first language does suggest that whatever is second is… dirty. Something one wants to distance oneself from. Something to be ashamed of. Schizophrenia colours a person’s whole life, and being ashamed of it can’t help.

My brother is schizophrenic/ has schizophrenia. I call him by his name.

pmoran, there’s a big difference between what doctors as individuals decide to do in specific situations with real people, with all the emotional factors at play, verses what doctors sanction, promote, and teach as a profession.

I might go along with hash oil, if I felt that was the best option for my patient. But I would not defend or promote hash oil on the Internet to patients I’d never met.

I would do this:
“use what precious time remains to make the patient’s last days more meaningful and to create lasting memories.”
Or something like that.

Not sure if you were quoting someone else, but it sounded as if the doctors have pronounced their judgement and all you can do is to make the remaining days of the patient more “meaningful”. Correct me if that’s not what you meant.

“Doctors…don’t even study nutrition and diets.”
How misinformed are you then?

I have asked this question in the past. I really want to know how many credit hours of nutrition do the doctors study? No one has answered yet.

Outside of our inherited genes, about which we can do precious little, diet must be the most important factor in our health. So it makes sense that we focus most on it when we talk about health. To me it appears that most of the conversation here seems to be about medicines and procedures. Do you see anything wrong?

“I have asked this question in the past. I really want to know how many credit hours of nutrition do the doctors study? No one has answered yet.”

This is probably pretty dependent on the specific medical school curriculum. I had what amounted to a 3 credit nutrition course in medical school. It was a decent course, but there was certainly some room for improvement. We took this at the same time as we took metabolism as part of our biochemistry curriculum–obviously there was some overlap between the two courses with respect to vitamins, minerals, energy molecules, etc. . .the study of nutrition, in my humble opinion, is really just the study of the biochemistry of metabolism. It did come in pretty useful. . .as an intern I looked like a rock star when I diagnosed an old dude with scurvy–he had all the classic clinical manifestations of vitamin c deficiency.

I would gather some medical schools require more credits in nutrition, and some less; but all probably require one or two courses in biochemistry.

Digestion, absorption, and nutritional requirements would be taught under Physiology. Biochemistry would deal with what nutrients do subsequently. Nutritional diseases (i.e. those actually identifiable as real entities) would be dealt with under General Medicine.

Nutritional deficiencies would crop up again in clinical years under the differential diagnosis of some conditions.

If “Nutrition” was taught as an isolated subject called that it would be presumably have to include a great deal about of these allied subejcts to be at all useful in any kind of clinical practice..

As I said earlier, besides the genetics, diet must be the most important factor when it comes to health. If I am very health conscious and always eat nutritionally fulfilling foods, then it must result in a good health for me in the term. Will I still get diseases like diabetes or heart ailments? Perhaps, but with a healthy diet, I could postpone that day. I don’t know if I need a peer reviewed, double blind study to validate that, but I don’t want to wait for that day.

Just to consider one example, take diabetes. One of the well known precursors to it is a compound known as triglycerides. It is fairly easy to control this factor by diet and exercise and in some cases, supplements (Niacin). This clearly shows that diet can be used to help people avoid or postpone disease. There may be other precursors that can similarly be controlled by diet and exercise. Given the benefits of prevention, why isn’t there more of an emphasis on prevention?

I would bet that doctors spend a lot more time prescribing medicines and procedures than talking about nutrition and diets. At least that has been my personal experience. As a society we need to look at the root causes of diseases and focus more on preventing them than curing them. It will not only make a lot of people healthy, but also reduce overall healthcare costs.

It seems to me that this thread has lost its way from the (IMO) interesting discussion about what to do when the evidence runs out. Now we are going back and forth about person-first semantics and credit hours for nutrition classes in med school. Sigh.

and kul is still quite lost. Suffice it to say kul, we learn nutrition in pretty much the way described above. Anything more than that (which I believe you are referring to) get handed off to a nutrionist – that is why their job exists. It is not the role of a physician to come up with specific diets for patients but to diagnose clinical deficiencies if present and provide general guidelines with a few specific points. You also undoubtedly over value diet. Put quite simply, yes, certain diets can be a bit more healthy for you in that they promote good regular bowel health, and/or good cholesterol, and/or good blood pressure. Beyond that, unless there is a specific deficiency in the diet, not much else would change. In other words you do not become “healthier” or cure diseases (save the obvious) by changing or augmenting diet. I have, in a paragraph, summed up ~85-90% of the role of diet. The 3 weeks I had last year in med and the 4 I am having this year that deal with this are reasonably sufficient then.

You may argue that diet is much more valuable, can make vast differences, etc. But if it falls outside the criteria above then it is either a minor point or simply not true.

As for the actual topic of this post, one which I actually find very interesting since it gets at the heart of what a physician’s role is in society and patient care, I reckon that has been addressed pretty sufficiently. The more reasoned opinions seem to converge roughly around the same point, and then personal value is injected (i.e. “I would go to a tropical island and make my days more memorable” etc). So up until that point, we are in agreement. The beauty is that is all we need to be in agreement about. Beyond that personal value and choice enters the picture and I strongly advocate that people should have that and the physician’s role is to inform as best as possible.

Since it seemed relevant to this thread, but also to the overarching CAM mentality and its scorn towards “western” medicine as being unconcerned with the patient as a whole, only treating symptoms, etc etc I decided to take a few quick snaps of the walls in my medical student lounge at the hospital. This is where we take breaks from our studies and ward rounds and one of the walls has the following sentences engraved into the wood paneling:

“respect the hard won scientific gains of those physicians in whose steps I walk”
“share such knowledge as is mine with those who are to follow”
“do not treat a fever, but a sick human being”
“prevention is preferable to cure”
“tread with care in matters of life and death”
“respect the privacy of my patients”
“warmth, sympathy, and understanding may outweigh the surgeon’s knife”
“this awesome responsibility must be faced with humbleness and awareness”
“there is art to medicine as well as science”
“I must not play God”
“call in my colleagues when the skills of others are needed”

Here are the photos I took Sorry they are of such poor quality, I did it quickly on my iPhone on my way home. I added the text above each engraved panel to make it more clear.

The point I’d like to make is, say what you will about the application of such ideals – I agree that many a physician has fallen short and that the practicality of life and the fickleness of human nature has led to varying degrees (and failures) in living up to these ideals – but for all the sCAMster types out there, and for folks like kulkarniravi who are not privy to how med students are taught, do know that these are the ideals we are taught to strive for, that are motivation starts here, and that (for the most part) this is why we do medicine. These are literally engraved in the walls, as they are such valued lessons to live by in our professional practice. I actually got goosebumps writing these out.

The next time someone claims we don’t care about prevention, or only view our patients as a chart full of signs and symptoms, or only care to cut and medicate with wanton disregard for the person we are treating, I will merely reference these images.

Perhaps I should also put up the title slides for some of our lectures – such as one recently called “assessing the spiritual and human needs of patients” with the objective of “to encourage people to offer not only their knowledge but their humanity to those for whom they care.”

Once again – argue about how well these may be actually implemented in the real world, but please do not claim that we are not taught these things, do not care for such things, and that caring for a person is not at the core of the ethos of medical practice.

I think kulkarniravi is trying to say that if this poor girl had consumed a proper diet, the whole recurrent brain tumor affair might have been avoided.

The body is a temple intelligently designed by God, who created the growing things to nourish and sustain it naturally. Too much stress and negative emotion and eating the wrong things are the root cause of dis-ease.

Just a reminder: “dietician” is a protected term and “nutritionist” is not.

Anyone claiming doctors don’t study “nutrition” in med school has a poor understanding of biochemistry and metabolism. Or perhaps has an overly concrete thought process due to brain injury.

Each to their own, I guess, but if I ever develop a medical condition I don’t want to be defined by it. I will be a person with diabetes, not a diabetic. You think schizophrenia is different? Nope. No matter how severe the illness, there is a person behind that illness and that person deserves to be recognised. It doesn’t deny the illness, it just puts it in perspective. The person is larger than the illness

And regarding “patient choice”. I have already agreed that it can apply. I even offered my own situation as regards prostate cancer testing. But I would be surprised if the following were not true:
Most men aged forty to fifty simply go along to their doctor to be tested . Either because their wives have heard this piece of medical advice offered by celebrity sufferers of prostate cancer or their mate has had it done. It’s not something they “choose” to do, they just go along and have it done. I’m also pretty certain most doctors faced with such a patient will simply just do the test. The guidelines suggest doctors should discuss the pros and cons before testing. Perhaps they do, perhaps they don’t. Regardless, the test will be done. There is nothing here that I can identify as “informed choice”.
I would be surprised if this is not the norm for the vast majority of patients for the vast majority of illnesses.